Living with, and in spite of, metastatic breast cancer

Be Prepared: One for the Metsters

After a few recent and unexpected deaths in several of my communities, I’ve been reflecting a lot about “the end” lately. I’ve realized that in certain ways, I’m lucky to know that I’m terminally ill. With a medical diagnosis, even of metastatic cancer, you get a suggested chunk of time you’ll still be on this earth from that prognosticator – the oncologist. Your time frame may start to disintegrate or may even extend depending on how long your body wants to cooperate with treatment.

And so I thought I’d share some of the things Tim and I have done to use that time effectively after my cancer returned in 2015. It took some time to get through them between the chemo and radiation and surgery and accompanying side effects, and some are still works in progress. But I can say, almost four years after my stage IV diagnosis, that getting these logistics ironed out early has helped us live in the moment and do things like visit London and see the Grand Canyon. And what you do now may help ease the pain for your friends and family after you’re gone.

Meet with a lawyer. S/he can help with a will, a living will, power of attorney, and any trusts you might want to set up. If you have children, discuss guardianship if needed. We didn’t have any of this done before my diagnosis; now I thank God that we didn’t need it sooner.

Talk about finances. Assess your life insurance benefits, investments, and financial obligations with your significant other or another designated person. The Internet police may disagree with me, but make note of all your critical usernames and passwords (and URLs, if necessary) for that person so they can access and/or close your accounts as needed. It might also be a good time to visit with a financial planner if you don’t already have one.

Reach out. See the people that are special to you while you can. If that’s not possible, stay in touch online or pick up the phone. If there are things you want to say to them after you’re gone, write notes to them to be distributed at that time.

Visit a funeral home. It may sound morbid, I know. But even if you plan on getting cremated, it’s still beneficial to get some idea of what services are available and to share that with your spouse or whoever else you want to entrust your final wishes to. If you have a pretty firm idea of where and how you want things to go, some funeral homes will allow you to put down an advance deposit or enter a payment plan.

Leave your family a list of your memorial wishes. Do you want a traditional funeral or a memorial service? Do you have a preference on an urn or a coffin (see above). Would you like certain music to play or pictures to be displayed? Would you like visitors to donate to a given charity versus sending flowers? Should there be specific religious practices incorporated? In addition to helping guide your family during a difficult time, the service will be more reflective of your personality and life.

Leave notes and images for your obituary and any memorial service handout, if needed. (Or write it yourself, said the editor). But do leave room for people who are important to you to have input. Make sure you tell the person who will be managing this for you what your expectations are.

Thin down your “stuff.” Spark it up like Marie Kondo and keep your keepsakes, but purge what you don’t use. There are plenty of charitable organizations that will come and pick it up at your home. As for those special items that you plan to “pass down” one day, do it now instead of later. If you want to give a piece of jewelry to your niece, do it while you’re still on this earth so you can tell her what it means to you. It’s so much nicer than leaving a list with a lawyer. Or worse yet, having your relatives argue about who gets what (I want to stress to my family that I’m not talking about YOU guys).

Do you have additional items you think should be on the list? Post them in Comments below.

And if you came here to find out how I’m holding up, I don’t have much additional news. Ativan, Herceptin, and Perjeta seem to be doing the tumor-stopping trick for now, and it’s just the usual dance with side effect control (latest weird thing – bicep pain – and it’s definitely not from lifting weights). We’ve been working with different doses of steroids to try and alleviate that. I have another brain MRI happening in about a month and I’ll keep you all posted on the results.

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20 thoughts on “Be Prepared: One for the Metsters”

You are always so insightful and positive. Thank you for the words of wisdom. I am so glad to know that the current cocktail is doing what it is supposed to do! Sending happy thoughts, positive vibes, good juju and lots of love! I hope to see you soon.

You are the bomb. With aching biceps and annoying memory short circuits, you still manage to write something that is brilliantly clear and generous and useful for others. And thank you, I think I’m going to watch the Big Lebowski tonight. 🙂

As always, thank you for just being you.
I do have an addition. Be sure to note the difference between financial power of attorney and power of attorney for healthcare and have both before any needs arise. As a physician, once I see a need to declare a person incompetent to make medical decisions, it is too late to put a financial power of attorney in place. The recommendation is to put that in order or “get ones affairs in order” many years before it is necessary and store it in the lockbox for days unknown. Only when we are of sound mind and body can we determine who should manage our financial/business affairs.

PAULA, you are an inspirations to us all–I’m not sure how many of use could go through what you are going through with the same positive outlook, smiling, never complaining, and always thinking of others. As I have told you many times before, and once again, You are my daughter even though I didn’t give birth to you. I couldn’t love you more–you are always in my heart and thoughts. You are a wonderful Mother, wife, daughter, sister and all round wonderful person who will leave a beautiful mark on this world. I love you with all my heart and your Dad is always holding your hand.

I agree so Much with this list. Planning my dads funeral before he passed helped take so much pressure and sadness away from my mom. And now she prepaid for HER funeral “I’ll have what HE’S having” she said….

True story- I actually searched eBay for a tin Folgers can for myself. It’s still a better deal than “our most modestly priced receptacle.”

Hi Sweetie,
Great words of wisdom. I’d like to add one – DON’T make loved ones promise to do something after you are gone. EX: Dad makes you promise to care for Mom at home. Therapy clients I know made that promise and are killing themselves because Mom’s dementia is totally unmanageable now. That promise, initially made with love, is tearing the family apart because they refuse to move her to a well-run, compassionate center, yet can’t handle her needs at home anymore.
((hugs)),
Janis

That’s a great addition, Janis. I guess it depends on what the promise is. Certainly a huge issue like Alzheimer’s care in the home vs in a LTC facility should be discussed as early as possible instead of becoming a deathbed wish that relatives feel compelled to agree to. I’m glad your clients have an excellent therapist to help them through this!

Paula, you are amazing and so giving. Thinking of others while you’re in the midst of riding this wave. Perhaps the only thing to consider adding is talking with immediate relatives in advance so they aren’t surprised by your wishes or squabble about it with others. That takes energy though.
Sending you and Tim much love.
Theresa

Oh yeah – appoint a social media and internet trustee to follow up on putting messages on written by you or whomever you’d like to write it after you’re gone, make sure they have passwords and URLs, how long you want your profiles and other messages to remain up, and when you want them taken down. I cannot describe the indecency of Facebook which will not remove my dead parents! It’s incredulous but even with a death certificate and the same last names, I can do nothing but feel overwhelmed with sadness every stupid time I get a “say happy birthday” to my mother or father. Some sites have a way to assign someone as your trusted person to handle it, LinkedIn does. But Facebook probably makes money from a lot of dead subscribers. I have not looked into Twitter, Google+, Pinterest, Instagram or the others yet, I was too mad at Facebook and didn’t want to dig anything else up (pardon the pun) when I was attempting to stop the insanity.

Oh that’s terrible that they aren’t responding to you about your parents! You are absolutely right about putting someone in charge of that I set up my husband as my “legacy” person on Facebook after I just happened to trip over a post about it. If you go to Facebook and click on the question mark in the right side of the top bar (this is on a computer, not a FB app) and type “legacy” into the help box, they’ll give you a bunch of links on how to do this. You’ve probably been there and back again, though, to try and solve your ongoing issue. I haven’t tried to set a contact for other social media yet and need to (thanks for the reminder)!